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  • Amy Agape

Chronic Heart Failure: Diagnosing Broken Systems

Each time I sit down to do Passings work -- to write a blog or answer an email, to engage in a spiritual companioning session or to create the next piece of my memoir -- I pray. I have a very elaborate prayer ritual that I created for Passings; the last line of that prayer is this:

May I shine a light on the chronic heart failure that exists in our culture, our traditions, our lineages, our families, our psyches -- and on the heart’s ability to work even when failing, to transmit even when weak, to circulate until the last moment of life.

Today, I am adding “our structures, systems, and institutions” to the list of places I want to illuminate in terms of heart failure.

One of my umbrella diagnoses is Chronic Heart Failure. For years, I avoided that term, because it did not make sense to me. How could my heart be said to be failing when I was still alive? It seemed to me that my heart would fail when it stopped beating the very last time. Then the absurdity of the words began to delight me; my heart, not knowing it had been labeled a failure, continued to do the very same work it had been doing since days after I began to be formed in my mother’s womb. Sometimes it struggled greatly to do that work; often, it needed help to do that work. But there it remained, doing the work. Failing and succeeding at the same time.

That delight grew into fascination not only with the term but with the multitude of ways that Chronic Heart Failure can be used as a metaphor, as a mode for me to understand the functioning of diverse organisms, and as a method for me to treat the places where I come into contact with heart failure. I see so many different systems -- from freeways full of traffic to bureaucratic organizations, from the dynamics of a small family to those of a large university -- as akin to our bodies’ circulatory systems.

Right now, I am using metaphorical chronic heart failure as my main method for understanding systemic racism and ways we might correct it.

For many of us with heart failure, life can continue for some time without a total breakdown. And racism is like that; it has been continuing to happen, clearly acknowledged by a multitude of people but also ignored by hoards of others. I love that my condition is called Chronic Heart Failure, because that term describes the seeming foreverness of this situation. My heart will always struggle with failing. Sometimes that struggle will be intense and severe and will require major surgery. Sometimes it will slow me down and ask me to rest, to keep my feet elevated, to refrain from activities I love. Always, it requires that I take large amounts of medication and watch my diet carefully.

Some heart failure exists in organisms from birth. Babies are born with broken hearts, and surgeons work to fix them quickly. Others of us develop heart failure over time. Mine, for instance, is the result of me unknowingly inhaling a fungus many decades ago, a fungus routinely met by humans in the eastern half of the US.

And the ways that we treat different kinds of heart failure differ as much as their causes and presentations. Some patients require merely dietary and lifestyle changes, while others like me may need multiple surgeries throughout their lifetimes.

How is racism an example of Chronic Heart Failure?

Every piece of our lives -- our schools, our hospitals, our governmental bodies, our economy -- is affected by this disease of oppression. As with blocked arteries, access to basic supplies needed for life is cut off for those persons who have brown or black skin. Even those of us who are white are affected by racism, because systems of oppression harm everyone touched by them. Some of us have been aware of this our entire lives; others are just starting to learn about the existence, causes, and effects of racism in our world.

And what we may try to use for treatment with other failures at the heart of different institutions and cultural systems will not be enough. This heart was broken from the beginning. The very structures of the US country, economy, and culture rely on the belief that some persons have less value than others. We can no longer live with that disease at the heart of everything circulating amongst, between, and around us. We cannot bypass just one artery -- police treatment of black persons or disparities in healthcare coverage, for example -- and pretend like that will solve the underlying issue.

This heart was broken beyond repair from the beginning.

We need a heart transplant. I have no idea how to go about doing that, but I am able to provide that diagnosis.

And, as with any broken thing -- a machine or a body part -- the diagnosis is the essential first step in creating healing.

I remember praying as I waited for the results of my earliest chest CT scan. My pulmonologist had told me that he noticed some “concerning spots” on my X-ray; although he did not think I had cancer, that diagnosis had to be dismissed. I spent days hoping, praying, that I did not have lung cancer. I even thought several times, “Anything but cancer. I can deal with anything except cancer. That would be the most challenging thing to have.”

Then the results returned. The ever cheerful doctor said, “Good news -- you don’t have cancer!” And we both let out deep sighs. “But let me show you something interesting,” he smiled as he pulled up the image of my chest. “See this white egg shape here in the center of your chest? I don’t think it has anything to do with your symptoms, but it is a fascinating thing to find here.”

That white egg shape had everything to do with my symptoms. Within weeks, we would have a name for its cause and even the beginnings of a constructed narrative about its origins. That little egg revealed something much more deadly than cancer. And when I got my first diagnosis, I longed for the option of lung cancer.

With lung cancer, I knew that there were options. I could have chemotherapy and radiation, surgery to remove a lobe or even my entire lung if necessary. It was not a great diagnosis, particularly in someone so young who had never smoked.

But the survival rate was much better that it was for this other diagnosis (Pulmonary Veno-Occlusive Disease), which was 0%.

My pulmonologist had chuckled as he talked about this interesting thing that he thought was not causing me any harm. All the people who dismiss racism as though it were some relic of the past or merely an ideology held by a small minority of folks remind me of that doctor’s response to my condition.

Like him, they have it all wrong.

The CT technician, however, had taken one look at the screen as I lay before him in the machine and said, “Oh, that’s very bad.” Technicians are not allowed to speak about what they see, of course. But he could not help himself, just as so many of us can no longer deny what we are seeing in front of us.

What he saw was very bad.

And his naming that was a rare gift to me. It affirmed what I felt to be true, that I was seriously ill and in need of immediate intense care. His honesty propelled me to seek other practitioners who would not laugh off the oddity in my chest.

His honesty led to my diagnosis. And even though that diagnosis was disastrous at the time, it was the essential first step in treating my condition.

The diagnosis of Chronic Heart Failure caused by racism and white supremacy is disastrous. It is terrifying and at times leads me to feel hopeless.

And it is the essential first step in treating our shared condition.


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